I cannot begin to explain to you the feeling of relief that comes over you when your five year old son’s cardiologist tells you he can resume normal activities and that he doesn’t have to take his Lasix anymore.
For most CHD children that’s something that is not normal. Most parents don’t get to hear that.
But….
WE DID!!!
It’s like a weight has been lifted off my chest and I can breathe.
Monday, February 27, 2012
Monday, February 13, 2012
Make-A-Wish
David has officially made his wish and he wished for a trip to Disney World. He hasn't been officially granted this wish yet but the chances of it happening are basically 100%.
Our Make a Wish ladies are Valerie and Tara. They are super nice. They brought the boys a gift. David got a Dinosaur that is remote controlled. It moves, it's eyes light up and it walks. He is a wee bit afraid of it now that it's out of the box. Matthew got a Matchbox police station thing. They do love their toys and were so excited.
We filled out a ton of paperwork. Now we just wait for the official wish to be granted.
Our Make a Wish ladies are Valerie and Tara. They are super nice. They brought the boys a gift. David got a Dinosaur that is remote controlled. It moves, it's eyes light up and it walks. He is a wee bit afraid of it now that it's out of the box. Matthew got a Matchbox police station thing. They do love their toys and were so excited.
We filled out a ton of paperwork. Now we just wait for the official wish to be granted.
Friday, February 10, 2012
1 in 100
This being CHD Awareness week, I had plans on posting stories of CHD on this blog but, my computer is being a retard and not letting me on blogger. I have no idea why. I can get on here on Paul’s computer but not mine. I’ve scanned it for viruses and come up with nothing.
Any who… Reading these stories of CHD makes me realize just how lucky we (David) are. Most of these stories are not as good as David’s. David does have what’s called Shones Complex. It is what it says… its complex. You’d think with something that is ‘complex’ he would have more issues then he does. All these stories, babies were in ICU for a long time, David’s first surgery he was in ICU a week. The 2nd was two days I think, and this last one he was in for less than 24 hours.
These babies/toddlers, here in the hospital for weeks to months. David’s longest stay in the hospital was 15 days. Five days after birth in the NICU, seven days in the PICU, and then three days in general care. He skipped moderate care. Most of the stories I read, that doesn’t happen.
These babies/toddlers come home on numerous medications, on oxygen, with feeding tubes, and stay on them for long periods of time. We came home with Lasix, once a day then taken off the medication shortly after. David should be off his Lasix this time at his one month post opp appointment. No feeding tube, no oxygen, just one medication for a short time.
David does have some developmental delays like most kids with CHD. Though not severe, he will function as a normal person but will always need a little extra help with learning. Some of these kids with CHD are not so lucky. A LOT of them die as a result of CHD. Some have surgery and never recover. Some recover but have such awful lasting problems they die suddenly at home. Some of them require a heart transplant.
This is a BIRTH DEFECT. It is the most common birth defect and kills more children then childhood cancer, yet funding for research is zero compared to cancer. For the record I do NOT have anything against raising money for childhood cancer. It’s a sad and unfortunate thing and I believe we are super close to a cure but CHD needs more funding and research.
Why do I believe CHD is over looked? Because it’s the unseen birth defect. Most children with CHD appear healthy on the outside, other than the oxygen on their nose. They are clothed so you don’t see the scar down their chest, or the rib cage that us bulged up on one side because it didn’t heal back together just quite right. You don’t see the pneumonia that CHD children tend to get in the colder months.
You don’t see the fact that my five year old son is too scared to look at the scar on his chest.
You don’t generally see CHD but ask around, I guarantee you know someone with a CHD.
1 in 100 babies is born with a heart defect. David is 1 in 100.
Any who… Reading these stories of CHD makes me realize just how lucky we (David) are. Most of these stories are not as good as David’s. David does have what’s called Shones Complex. It is what it says… its complex. You’d think with something that is ‘complex’ he would have more issues then he does. All these stories, babies were in ICU for a long time, David’s first surgery he was in ICU a week. The 2nd was two days I think, and this last one he was in for less than 24 hours.
These babies/toddlers, here in the hospital for weeks to months. David’s longest stay in the hospital was 15 days. Five days after birth in the NICU, seven days in the PICU, and then three days in general care. He skipped moderate care. Most of the stories I read, that doesn’t happen.
These babies/toddlers come home on numerous medications, on oxygen, with feeding tubes, and stay on them for long periods of time. We came home with Lasix, once a day then taken off the medication shortly after. David should be off his Lasix this time at his one month post opp appointment. No feeding tube, no oxygen, just one medication for a short time.
David does have some developmental delays like most kids with CHD. Though not severe, he will function as a normal person but will always need a little extra help with learning. Some of these kids with CHD are not so lucky. A LOT of them die as a result of CHD. Some have surgery and never recover. Some recover but have such awful lasting problems they die suddenly at home. Some of them require a heart transplant.
This is a BIRTH DEFECT. It is the most common birth defect and kills more children then childhood cancer, yet funding for research is zero compared to cancer. For the record I do NOT have anything against raising money for childhood cancer. It’s a sad and unfortunate thing and I believe we are super close to a cure but CHD needs more funding and research.
Why do I believe CHD is over looked? Because it’s the unseen birth defect. Most children with CHD appear healthy on the outside, other than the oxygen on their nose. They are clothed so you don’t see the scar down their chest, or the rib cage that us bulged up on one side because it didn’t heal back together just quite right. You don’t see the pneumonia that CHD children tend to get in the colder months.
You don’t see the fact that my five year old son is too scared to look at the scar on his chest.
You don’t generally see CHD but ask around, I guarantee you know someone with a CHD.
1 in 100 babies is born with a heart defect. David is 1 in 100.
Wednesday, February 1, 2012
David's Surgery (two weeks later)
Laying in bed last night my thought’s went back to David’s surgery. I realized just how calm I was through the whole thing. Even when Dr. Bove came in and talked to us before and told us that he might have to replace one of David’s valves. I didn’t like it but I didn’t freak out. I just KNEW that everything was going to be ok. My Mommy instinct was right again!
Two weeks ago yesterday David had surgery, two weeks ago today we was moved from ICU to a regular room. 24 hours after surgery and he was in a regular room! Less then a week after surgery he was released from the hospital! By the response of others I get the feeling that this isn’t normal for a child to move this quick but my baby did! David was only in the hospital four nights total. How amazing is that?!
Now that he is back to ‘normal’ I am allowed to freak out over what happened two weeks ago and how serious the whole thing really was. David has what is called Shone’s Complex, and it’s basically what it says, it’s complex. His biggest issues are this mitral valve, and his aorta (stenosis) including the aortic valve which is the one he told us he’d have to replace. When Dr. Bove came out of surgery so quick we thought either something is really bad or really good, it was really good. The ring in the valve area came off with no problem; the stenosis (narrowing) in the aorta came out great! We (David) got lucky!
Now we are looking forward to David going back to school this Friday! I’m a little worried of him being around all the germs. But really? What is he going to catch on Friday that he wouldn’t catch on the following Monday? What if he does get sick and I have to miss a day of work to be with him, or I get sick and have to miss work? I won’t get paid for it because I have no time left until March. Oh well, if it happens it happens. My child and my health is more important than that job, we’ll make do.
On a lighter note, David got paperwork from the Make a Wish Foundation! I finally sent the form back in last week. I was waiting for this surgery to get over with before I worried about that. A lady named Valerie called me today about setting up a meeting to go over the paperwork and talk about David’s wish. Since I have no vacation or sick time at work I told her it’ll have to be on a weekend and she said that was fine but she’d have to get back to me. Valerie and Kara are going to be David’s wish granters. She had to get with Kara and let me know what weekend would work for her. I’m excited! DISNEY HERE WE COME!!! I know it’s David’s decision on where we go but we are pushing Disney, he’s been really getting into the Disney stuff. The boys LOVE CARS. My parents err… my Dad has gotten them into Nemo, and now the Lion King. I am trying to find Toy Story for a decent price because I am 99% sure they would love that. I tried Monsters Inc, yea they were not too happy with that one.
Two weeks ago yesterday David had surgery, two weeks ago today we was moved from ICU to a regular room. 24 hours after surgery and he was in a regular room! Less then a week after surgery he was released from the hospital! By the response of others I get the feeling that this isn’t normal for a child to move this quick but my baby did! David was only in the hospital four nights total. How amazing is that?!
Now that he is back to ‘normal’ I am allowed to freak out over what happened two weeks ago and how serious the whole thing really was. David has what is called Shone’s Complex, and it’s basically what it says, it’s complex. His biggest issues are this mitral valve, and his aorta (stenosis) including the aortic valve which is the one he told us he’d have to replace. When Dr. Bove came out of surgery so quick we thought either something is really bad or really good, it was really good. The ring in the valve area came off with no problem; the stenosis (narrowing) in the aorta came out great! We (David) got lucky!
Now we are looking forward to David going back to school this Friday! I’m a little worried of him being around all the germs. But really? What is he going to catch on Friday that he wouldn’t catch on the following Monday? What if he does get sick and I have to miss a day of work to be with him, or I get sick and have to miss work? I won’t get paid for it because I have no time left until March. Oh well, if it happens it happens. My child and my health is more important than that job, we’ll make do.
On a lighter note, David got paperwork from the Make a Wish Foundation! I finally sent the form back in last week. I was waiting for this surgery to get over with before I worried about that. A lady named Valerie called me today about setting up a meeting to go over the paperwork and talk about David’s wish. Since I have no vacation or sick time at work I told her it’ll have to be on a weekend and she said that was fine but she’d have to get back to me. Valerie and Kara are going to be David’s wish granters. She had to get with Kara and let me know what weekend would work for her. I’m excited! DISNEY HERE WE COME!!! I know it’s David’s decision on where we go but we are pushing Disney, he’s been really getting into the Disney stuff. The boys LOVE CARS. My parents err… my Dad has gotten them into Nemo, and now the Lion King. I am trying to find Toy Story for a decent price because I am 99% sure they would love that. I tried Monsters Inc, yea they were not too happy with that one.
Wednesday, January 18, 2012
David's Surgery
Currently I am sitting in room number 9 and the Ronald McDonald house that is IN Mott Children's Hospital. David is around the corner, and down a long hall in the ICU. Surgery went better then expected. Dr. Bove chatted with us before surgery and said me might have to replace the aortic valve, he would move one of his other valves to the aorta, then use a doner valve for the other one, since the aortic valve gets more pressure it would be better to use his own valve for less chance of rejection.
Well when Dr. Bove talked to us after surgery, sooner then expected. He said the 'ring' that was on the aortic valve came off easy and he didn't have to replace anything!!!
David did come off the vent last night and spoke to us so we are excited. We are going to head down to his room for rounds then come back and shower.
Well when Dr. Bove talked to us after surgery, sooner then expected. He said the 'ring' that was on the aortic valve came off easy and he didn't have to replace anything!!!
David did come off the vent last night and spoke to us so we are excited. We are going to head down to his room for rounds then come back and shower.
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